Every now and again I get asked whether being assessed for autism as an adult is ‘worth it’. This time it was by my physio, who I’d met just once before.
A strange question in any other scenario. ‘Was it worth getting assessed for that broken wrist?’ ‘Was it worth getting assessed for that lump, you know, the one that turned out to be cancer?’ Of course it was worth it. But for autism? The very question suggests the questioner doesn’t believe so; perhaps already doesn’t believe the diagnosis.
Now, I am an autistic adult who was diagnosed just a few years ago. Post qualifying as a teacher. Post travelling around the world. Post marrying the most wonderful man. Post becoming a mum (twice). Which makes me successful, right? Absolutely. No. Need. For an assessment.
Except that’s only part of my story. Also behind me are the spectacularly failed A levels. That battle with my weight. Several failed engagements. A rather unusual employment history. Plus all the things I struggled to keep hidden. Being bullied at school and later, by a bullying boss. Several abusive relationships. The countless times I put myself in positions of great vulnerability. And didn’t always escape unscathed. The exhaustion of clinical levels of anxiety. The falls into chasms of depression.
My diagnosis gave me, finally, all the things that I had struggled with for so many years. Self-knowledge. Self-esteem. Self-identity. The confidence to celebrate and embrace my differentness. Me. Making sense of who I am has been a gift.
But I’m also still autistic. I still struggle to communicate the thoughts and words that whirl inside my head. I still panic when I have to go out – to meetings, to events, to the park. Ensuring the kids have a clean polo shirt in their wardrobe each morning, and that there’s bread and milk in the house at the same time still stretches my organisational powers beyond their limit. My inability to filter sounds is still a handicap when there’s more than one sound in the house (always).
Which is why I was pleased and yet surprised that I was invited to meet with a Disabled Students Advisor at the University last week. I was sceptical. After all, I was about to start studying for a PhD. How much help would they think I actually needed? Would they think I was wasting their time? Would it be ‘worth it’, to have even just a quick chat with me? Would they just laugh in my face?
Surprisingly – not. We talked about how my autism might impact my ability to succeed as a student. We talked about the difficulties I had studying for my B.Ed, and how I was finally taught how to revise and sit for exams (shudders). How, as a Masters student, I lay all my notes all over the floor so that I could see all the information as a whole picture, and hold that in my head to write my assignments. And how that didn’t work for my dissertation (my floors just aren’t that big). How studying as a single, childless autistic student means you can take all day settling your mind to the task, then hyperfocus for as long as it takes to get the job done – without small people demanding dinner and bedtime stories, reassurance through the night, clean clothes and yet more food in the morning. And how organisation, scheduling and planning are all beautiful things for which I strive, but struggle daily to achieve.
At the end of this (and more) my Advisor suggested I would benefit from a Professional mentor to help me reduce the impact of my Executive Function impairments. She suggested some software that would help me capture my thoughts and ideas. She accompanied me to Student Services to reduce my anxiety – helped me clarify my calendar, and resolve issues around fees. She countered my impulsivity by creating space for options to be explained and explored.
What do I notice? My brain no longer feels on the verge of shutdown. Questions are answered. Concerns are addressed. I feel less anxious. I feel supported. I feel like I have my husband standing next to me, interpreting. Wow.
This is why yes, it is most definitely worth it. For me, right now, my diagnosis is making a difference to my life. It has improved my marriage, my parenting, my work, and now, already, my time as a student.
It continues to be a gift.
And I’m left wondering how different my life would have been if I had been given this gift as a child, instead of growing up behind a mask.